Private GP? Can they help?: Hi all, I have... - Thyroid UK

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Private GP? Can they help?

Staceoglasgow profile image
14 Replies

Hi all,

I have ordered a private blood tests this morning thanks to this group.

Long story short I’m on 75mg of LEVO and have been for 6 years.

I have been working with a PT on a calorie controlled gluten free diet for over 6 weeks with little results.

The PT suggested I looked into T3 conversation and as you can probably guess my regular GP won’t consider even testing or reffering me to endo due to my ‘normal’ THS levels. I have booked an appointment with a private GP via vitality on Wednesday but not sure if they will be much help either?

I still have a lot of hair loss and bad hives when cold. Not to mention the weightloss frustrations. Currently taking 2000ud Vit D,1000 Vit C, B12, Fish Oils, Zinc, Magnesium and iron daily aswell as completely gluten free.

Is there anyone out there who found a tangible difference to symptoms such as weight and hair after T3? And also what should i say to the private GP without being fobbed off?

Desperate for answers, thanks

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Staceoglasgow
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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

First step is to get FULL thyroid and vitamin testing done

Usually that means testing privately

Do you always get same brand levothyroxine at each prescription

If on 75mcg and it’s a single tablet that will be Teva brand

(Teva brand upsets many people…..so might be something to consider)

Dieting and vigorous exercise both tend to diminish Ft3

75mcg levothyroxine is only one step up from starter dose. Unless extremely petite likely to be under medicated

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Presumably you have autoimmune thyroid disease also called Hashimoto’s……especially as you’re trialing strictly gluten free diet

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

SlowDragon profile image
SlowDragonAdministrator

Meanwhile Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3 if necessary

tukadmin@thyroiduk.org

Staceoglasgow profile image
Staceoglasgow in reply to SlowDragon

Thank you! Yeah I ordered the thyriod test online for the TSH , T4 and T3. I’ll speak to my GP about testing for vitamins and antibodies but I won’t hold my breath.

I’m certainly not petite by any means so it’s interesting that I could be under medicated.

I’ll look more into Hasimotos thank you. And I have e-mailed the TUKadmin for a list of referrals but no reply as yet.

I feel a bit stuck between a rock and a hard place if dieting and exercise further decreases FT3 🙈

How are we supposed to loose the weight if we can’t get the support and when we try to loose the weight out our hormones even further out of sorts. I’m exhausted with it all

SlowDragon profile image
SlowDragonAdministrator in reply to Staceoglasgow

What were your most recent thyroid results from GP

ALWAYS test thyroid levels early morning, before 9am if possible and last dose levothyroxine 24 hours before test

Aiming for Ft4 in top third of range and Ft3 at least 50-60% through range

If Ft4 is low you’re under medicated and Ft3 will inevitably be low

If Ft4 is high and Ft3 is low you have poor conversion of Ft4 to Ft3

Low Ft3 leads to low vitamin levels

Low vitamin levels leads to poor conversion of Ft4 to Ft3

Gluten intolerant extremely common hidden issue

Approx how much do you weigh in kilo

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

SlowDragon profile image
SlowDragonAdministrator in reply to Staceoglasgow

Suggest you cancel just testing TSH, Ft4 and FT3 and order full thyroid and vitamin testing

Staceoglasgow profile image
Staceoglasgow

Recent bloods were

Serum TSH levels 3.33 mU/L it says

(Range 0.27-4.20)

That’s all they tested for.

I weight 99.6kilo.

I

SlowDragon profile image
SlowDragonAdministrator in reply to Staceoglasgow

You didn’t click reply button so I wasn’t alerted

Was test done early morning, ideally before 9am

TSH is far too high for someone on levothyroxine

See GP for 25mcg dose increase in levothyroxine

Bloods should be retested 6-8 weeks later

Meanwhile request/insist the GP test vitamin D, folate, ferritin and B12 and thyroid antibodies if not been tested yet

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

Persevere - have all guidelines printed and be ready to quote them

healthunlocked.com/thyroidu...

Staceoglasgow profile image
Staceoglasgow in reply to SlowDragon

This is all amazingly helpful thank you!!

Yes test was done at 8:30 am 24 hours after my last dose.

SlowDragon profile image
SlowDragonAdministrator

99 kilo x 1.6mcg levothyroxine = 158mcg as the likely dose levothyroxine you might need

Dose levothyroxine should only ever be increased in 25mcg steps upwards

So request/insist on increase in levothyroxine to 100mcg ….as per guidelines

Which brand of levothyroxine are you currently taking

Many people find different brands are not interchangeable

Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine

Always retest early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Staceoglasgow profile image
Staceoglasgow in reply to SlowDragon

Great thanks,

I’ll give them a call and see if I can get anywhere.

The brand is MercuryPharma.

SlowDragon profile image
SlowDragonAdministrator in reply to Staceoglasgow

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Generally they are widely available

Best to stay on same brand all the time, but especially when increasing dose

If GP is unhelpful over increasing the dose there’s a recommended endocrinologist on thyroid U.K. list in Edinburgh. They would instruct GP to increase dose levothyroxine and to slowly increase dose to high enough level to have TSH always around 1

Essential to test full thyroid and vitamin levels once year - usually that means testing privately

Test TSH, Ft4 and Ft3 via Monitor My Health 6-8 weeks after any dose change……in between that annual full test

SlowDragon profile image
SlowDragonAdministrator

See this post

healthunlocked.com/thyroidu...

Katrina999666 profile image
Katrina999666

Ive pmd you my experience of endo in glasgow

Staceoglasgow profile image
Staceoglasgow in reply to Katrina999666

Hi Katrina,

I couldn’t see you DM? I’ve sent you one let me know if you get it. Thanks ☺️

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